Dementia Caregivers Grief Soul Deep, Defies Labeling

When a beloved elder dies, we may have varying reactions, frequently changing moment by moment. Naturally, there’s grief and the realization that we’ve seen the last of our loved one’s physical presence. Often, however, if the death follows a long illness or significant pain, we can also feel a sense of relief that their suffering is over and we can get on with healing. It’s often the in between time - the caregiving years - that are the most difficult to label.

Both of my parents endured long, slow declines with significant pain before their deaths. However, my dad’s decline was one that many caregivers of those with dementia will relate to.

Dad had suffered a head injury during World War II, and after a long coma and a grueling period of recovery, he went on to lead a fairly normal post-war life. However, by his late 60s, he started having some issues with fluid building up behind scar tissue in his brain. During his early 70s, doctors decided that if he didn’t have a shunt placed in his brain to drain the fluid from his brain into his abdominal cavity, he’d eventually suffer from dementia. Therefore, Dad signed on for the surgery. Unfortunately, Dad’s surgery was one of the rare failures for that type of procedure, and he came out of the ordeal with severe dementia - exactly what the surgery was meant to prevent.

Dad’s dementia taught me what it was to both grieve immediately the loss of the man as he was before surgery, yet feel gratitude for having him alive. Gratitude aside, learning how to care for my now very changed father challenged me. Somehow, I had to muddle through what is often referred to as ambiguous loss, while putting on a brave face for Dad. This type of gut-level loss is often defined as a “confusing feeling of interacting with someone who is not fully present mentally or socially.”

The other term used for people who care for those who suffer from long illnesses, especially dementia, is anticipatory grief. Anticipatory grief is often described as the grief we feel in advance of an expected loss. With dementia, that “expected loss,” can be the knowledge that death will be the end result of the illness.

Since my father’s surgery and eventual death, I’ve struggled to coin another term for the feelings a caregiver of someone with dementia feels. Yes, I felt ambiguous loss, and certainly anticipatory grief. But the loss felt by those who love someone with brain damage resulting from dementia or an accident is something different from either ambiguous loss or anticipatory loss. Our loved one has undergone a personality change. We are faced with caring for the person we love who is still the same person, yet is very different.

I’ve never been able to find a label that suits the feelings I carried for the decade that my dad lived with his dementia. Whether we are talking about an instantaneous cognitive change such as my dad suffered or a long, slow decline, such as that of Alzheimer’s disease, there is, for those who love the person whose brain has been so damaged, a soul deep grieving that perhaps never will be appropriately labeled, even by professionals.

How to cope

During a study conducted by researchers at the University of Wisconsin, an adult child caring for a parent with dementia remarked:

"I think when you lose somebody through death, "after a while time kind of takes the sting away. But when you’re dealing with somebody with Alzheimer’s, you’re reminded of what you have lost all the time. Sometimes mom doesn’t know who I am and sometimes she’s very angry and that’s just typical of the disease. And even though rationally I know that it’s the disease, it’s like you wonder “why is that happening, you don’t like it but you have to deal with it.”

This woman speaks for many of us who’ve had loved ones lost to dementia. We need help getting through this difficult time. An excellent article by HealthWorks Collective gives readers some useful tips.

Educate yourself about the stages of Alzheimer’s Disease. I would broaden this statement to cover other dementias or whatever injury or disease is causing your loved one’s decline.

Expect the unexpected. I would say that any caregiver needs to make this part of his or her pattern of life. Plan the best you can for all contingencies, even knowing that you may be called upon to cope with something you could never have dreamed of.

Celebrate the good days. Focus on your love for the person and the memories you are creating. Also validate the hard days. Some days you will wrestle with very dark, despairing feelings, while others will shine with rays of light. This is beautifully said. The only thing I’d add is to remember who they were before their disease or accident, as well. Years of caregiving can have the effect of dimming memories of happiness from times before the tragedy. While we shouldn’t get stuck in “what was,” we can still cherish those memories.

Seek support from your community. Reach out to family, friends, neighbors, and your religious community. This step sounds easier that it is, but we do need to reach out for help. There are those willing to do what they can to help. They can’t take away our pain or “make it all better.” But having support can mean the difference between the despair of feeling alone and the courage to go on, knowing you have others who care about you and can relate to your situation.

Practice self-care. Take care of your own personal mental and physical health needs to be the best caregiver you can be. Again, this is easier said than done, but a sick caregiver can’t be an effective caregiver. Take care of yourself for you and for your loved one.

Ambiguous grief, anticipatory grief, unnamed grief that we feel so deeply that it has no name - all are part of losing a loved one whose cognitive abilities have been altered or stripped away, since this is how humans tend to express their personalities. To witness the loss of these abilities in someone we love causes unspeakable grief. In the end, of course, we’ll find our own way to cope and move on. However, knowing others have been through similar experiences and are willing to share their experience and strength can help. I know, because I’ve been comforted by many of you.

Resources:

Ott, C.H. et al. (2006) University of Wisconsin (A Guide to Supporting Family Caregivers Through the Alzheimer’s Disease Trajectory: Grief and Personal Growth. University of Wisconsin. Retrieved from https://cac.obiki.org/products.attachment/309556/Ott_Manual.pdf- HealthWorks Collective. (2013, March 14) Alzheimer’s, Anticipatory Grief, and Ambiguous Loss: Saying Goodbye But Still Here. Retrieved from https://healthworkscollective.com/ecaring/88986/alzheimers-anticipatory-grief-ambiguous-loss-saying-goodbye-still-here